Tag: primary immune Deficiency

Life seems to become more of a battle and you feel your losing control. Unable to do half of what you did a few years ago.

Life seems to become more of a battle and you feel your losing control. Unable to do half of what you did a few years ago. The weight of an “Invisible Illnesses” is now gaining more of your life, and its taking to much from you. We, who battle Invisible Illnesses, invest more than committing to daily routines. Over a prolonged period of time, each exertion of physical, mental, or emotional energy, is a trade-off for the internal physical damage to our body.

Have you kept up with the demands of “life” nonstop? Internally aging significantly faster than your friends or peers? Do you feel like you don’t have a lick of energy for anyone or anything?

Other than basic survival mode?

Sometimes, more often than not, I have those days, weeks, and months. Am I the only one that feels this way? Is it sporadic for some? Constant for others? Or not at all?

Are you still in the “conquering mode”? In other words, “pushing forward” to maintain the constant responsibilities of life; taking care of the spouse, kids, or parents, the bills, the extended families, the job, the meals, the shopping, the juggling act so many of us find ourselves in. Then of course, the endless last minute “triggers” that seem to derail even the most well-thought out plans or schedules. Not to mention the extra time and energy of juggling medications, physician appointments, testing and the list is endless.

Quadruple these daily stressors and events that even the healthiest among us can manage. Eventually, do you find yourself running out of steam and energy faster? Stressors mounting, forgetting or missing appointments…you may know what I am talking about.

In essence, I am touching upon the SPOON THEORY. Expanding upon it, and the consequences of the body, eventually imploding earlier than those without an Invisible Illness. Could it be because of the extended stressors when living with an Invisible Illness?

Could the organs have aged faster, due to fighting external stimuli more than our peers?
Do you feel 80 or 90 years old? Yet, your half that age? I am sure if one reads this far… they may be thinking, not me-or yes me! The not-me‘s: I am not defined by my Illness; I also believed the same (and still do at times). The yes-me‘s: spot on.

September is Sepsis Awareness Month. Get Ahead of Sepsis is a national effort to improve sepsis early suspicion and recognition and timely treatment, as well as prevent infections that could lead to sepsis.

SEPSIS.

September is Sepsis Awareness Month. A topic close to me, as I lost a close family member last October due to Sepsis. She went into the hospital for an unrelated and non-emergency medical procedure. She died two weeks later, in the hospital from Sepsis.

Although, the CDC states that Sepsis begins outside of the hospital for nearly 80% of patients. A CDC evaluation found 7 in 10 patients with sepsis had recently used health care services or had chronic diseases requiring frequent medical care.

Four types of infections are most often associated with sepsis: lung, urinary tract, skin, and gut.

-CDC

Protect Yourself From SepsisBe Informed about SepsisProtect Yourself and Your Family From Sepsis

Now you know! What’s the difference!? A lot, mainly A PI is primary, meaning born with it. HIV is acquired (contagious) after birth. Except when a HIV positive parent passes along the HIV virus to the fetus. It’s still HIV not a PI. Serum testing can confirm

Only available to subscribers! Launch of PI Patient Piracy e-Book Coming Soon.Now you know! What’s the difference!? A lot, mainly A PI is primary, meaning born with it. HIV is acquired (contagious) after birth. Except when a HIV positive parent passes along the HIV virus to the fetus. It’s still HIV not a PI. Serum testing can confirm.

A constant, one-sided headache that does not respond to any treatment and last for.weeks.to.months. It’s not a Migraine, in fact typical Migraine Medications make it worse. Guess what? I will save you the legwork because their is a condition and treatment for this debilitating chronic headache! It’s another “rare” diagnosis–because we are lucky like that 😂. There is also ONE treatment that works, and once you find out about it, you will appreciate it. Research is slowly coming out, the new “herbal” supplement is claimed as Melatonin, nope, melatonin did not work for me. Read on…

10 most “common” symptoms that present as symptoms of Primary Immunodeficiency (PI). PIs are complex and manifest differently, severely, and typically with unknown episodes/illnesses that are not as black and white as the warning signs. The warning signs listed are a good starting point for further evaluation.

Life seems to become more of a battle and you feel your losing control. Unable to do half of what you did a few years ago. The weight of an “Invisible Illnesses” is now gaining more of your life, and ...Read More

Another chapter in my book of life is either beginning, or ending. I began this "blog" as a journal......and the drama, trauma, dreams and love continue to write out my journey in this body. I am aging fast. I am ...Read More

Its January, where does the time go? Its been quite some time since I took a peek at my site. I knew I posted the full text of the ACA awhile back. Of course, I need to research the medical ...Read More

SECURITY UPDATES: IF you get blog updates by the "FEEDLY" (See photo below) interface (SPECIFIC FEEDS), Due to potential security risks, this method of "FOLLOW" will be discontinued on 11/17/17. Instead, sign up for SUBSCRIBE TO BLOG (first tab on ...Read More

Have you ever visited a Plasma collection facility? Have you heard the screaming ads on media of payments of up to $300 USD for 5 plasma donations? I have been to a few local Plasma collection centers. As well, I ...Read More

SEPSIS. September is Sepsis Awareness Month. A topic close to me, as I lost a close family member last October due to Sepsis. She went into the hospital for an unrelated and non-emergency medical procedure. She died two weeks later, ...Read More

http://asheducationbook.hematologylibrary.org/content/2012/1/301.full The Many Faces of Common Variable Immune Deficiency. (Cunningham-Rundles, C.). American Society Of Hematology. Volume (2012/12/8). Retrieved September 17, 2017 from http://asheducationbook.hematologylibrary.org/content/2012/1/301.full For personal use only ...Read More

View this post on Instagram What Every #chronicillness #patient needs to know How your illness is a billion dollar profit #pipunited #know via @RiplApp A post shared by Primary Immune Patients United (@pipunited) on Sep 17, 2017 at 4:15pm PDT ...Read More

The following information displays the 10 most “common” symptoms that present as symptoms of Primary immunodeficiency (PI). Research tends to agree on these broad “symptoms”. PIs are complex and manifest differently, severely, and typically with unknown episodes/illnesses that are not as black and white as the “Warning Signs”. If one has any 2 of the 10 warning signs, follow-up with the specific blood work described below.

Remember when stated, the 10 Warning Signs are not “black and white”? PIs are rare. Research is still in its infancy, and the Immune System is complex. I have witnessed children with debilitating arthritis and joint conditions, “strange” or “unknown” organ illnesses, enlarged spleens, heart and/or severe organ irregularities, and more. A PI is not a one size fits all. Neither are the comorbidities.
Comorbidites are the result (secondary or caused by) a Primary Immune Deficiency.
How can you confirm a PI? A simple blood test! The AAAI recommends, “An accurate diagnosis can be made through screening tests that measure immunoglobulin (IGg) levels or the number of B cells in the blood.”

I recommend saving (paper format) all serum testing, and filing in a safe place. The reason for saving previous serum or blood work, you can document decreases or increases, of the Immunoglobulin (IGg, IGa, IGm)or WBC (check the Albumin, Globulin, and the Ratios of A/G) of serum tests. This is especially true for children, as the immune system is not considered fully developed at younger ages. Which makes diagnosing a PI in young children more of a challenge. Even when children show definitive symptoms early in life. Another reason it’s nearly impossible to find IGg results 10 years later.
A PI is the umbrella diagnosis for all specific rare diseases that fall under the criteria of a PI. The second “umbrella diagnosis” under PI is Common Variable Immune Deficiency (CVID). CVID symptoms vary widely, and is less understood (as most PIs). The CVID diagnosis is confirmed if the IGg levels are significantly decreased in either IGg and IGa, OR IGg and IGm.

Further serum and clinical testing will involve what is called a, “Vaccine Challenge”. If the “Vaccine Challenge” confirms the inability for the person to create “memory” (B) cells to previous vaccinations, the diagnosis may be CVID. There may be other PI deficiencies, or genetic defects interacting, in addition to CVID diagnosis.

The rarity of a specific PI, or CVID, and diagnosing by medical professionals remains a challenge. Many physicians never see patients with CVID, and are unaware of the disease. It’s imperative to seek a Clinical Immunologist that is familiar with CVID or PIs if the IGg results are abnormal. You can request the immunoglobulin blood work at a primary doctor (get a copy!.

Posted below you will find reference points, of testing, to discuss with your primary/preferred physician.

If one is ultimately diagnosed with a PI, A patients decision of specialists, is a personal, private decision. The decisions involve many factors; Knowledge of the specialists, geographic location, experience, insurance, and your personal preferences.
I do NOT recommend sourcing any specialist from any one entity.

***I do NOT endorse, am not employed, and have zero affiliation with the sources of the information presented. The pictorial information are public resources that helps the reader to understand basic warning signs of a PI.

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H.R.1 - For the People Act of 2019 H.R.1044 - Fairness for High-Skilled Immigrants Act of 2019 H.J.Res.46 - Relating to a national emergency declared by the President on February 15, 2019. S.47 - John D. Dingell, Jr. Conservation, Management, and Recreation Act H.Res.109 - Recognizing the duty of the Federal Government to create a […]